Our daughter Lennon was born on September 19 2018, healthy and happy. When Lennon was about 6 weeks old we started noticing a decline in her head control and a lack of movement in her legs.
After multiple visits to our family doctor, pediatrician, pediatric neurologist, blood work, a cranial ultrasound, a hospital admission for RSV & Influenza A, and a trip to McMaster Children's Hospital, Lennon was diagnosed with Spinal Muscular Atrophy type 1 on January 17 2019 at 4 months old.
Spinal muscular atrophy (SMA) is a disease that robs people of physical strength by affecting the motor nerve cells in the spinal cord, taking away the ability to walk, eat, or breathe. It is the number one genetic cause of death for infants.
SMA is caused by a mutation in the survival motor neuron gene 1 (SMN1). In a healthy person, this gene produces a protein that is critical to the function of the nerves that control our muscles. Without it, those nerve cells cannot properly function and eventually die, leading to debilitating and sometimes fatal muscle weakness.
Though the diagnosis was devastating, Lennon remained as happy & sassy as ever and our warrior princess showed us that she was ready to fight. We had hope, the first ever approved treatment for SMA, Spinraza, was available to us. Spinraza works by injecting extra SMN2 protein (the back up for the SMN1) via a lumbar puncture every four months,forever. With Spinraza Lennon regained movement in her arms and some head control, however she did need to have a G-Tube placed as her swallow weakened to the point that she was silently aspirating her food. She also now needs a BiPap machine to help her breathe while she sleeps. We are forever grateful for all that Spinraza has done for Lennon, and so many others!
On May 23 2019 the FDA approved a second treatment for SMA, "Zolgensma" it is a gene therapy and it works by using a carrier virus to deliver a functioning copy of the missing SMN1 gene. It is a ONE TIME dose administered by IV. While Zolgensma is not a cure, the drug has shown amazing results and it is our best chance at giving Lennon a long and healthy life! Currently it is only being offered in the United States.
On October 14 2019 we took Lennon to be assessed at a hospital in Erie, Pennsylvania US. The doctor we saw there really got the ball rolling for Lennon to receiving Zolgensma! We have completed all but one pre-procedure test and we are scheduled to go to Rochester University - Strong Memorial Hospital for the final lab and consult with the administering doctor on November 27 2019!
We are all set to get our warrior princess this treatment, except it comes with a hefty price tag of $2.125 million USD, because we are not US citizens (we are Canadians living in Canada) we are unable to receive any coverage from OHIP or our private insurance, so we are asking for help, whether it be via donation, sharing Lennon's story, recommendations to grant programs and/or sponsorship's, or good vibes, positive thoughts, prayers and well wishes!
Thank you for taking the time to read Lennon's story and if you have any questions please feel free to ask.